Personal Health : A Day at a Time : For Teens With Cancer, Innovative Groups and Peer Support Offer a Real Boost
For most youths, the teen-age years are a time of struggle with a budding sense of independence, the first twinges of nascent romance and such early power tussles as competition over use of the family car.
For 18-year-old Laura Jetton, however, adolescence was spent coming to terms with significantly greater developmental issues. When she was 12, Jetton was found to have cancer; a tumor appeared on her left scapula and she underwent a year of chemotherapy.
Then, in the second semester of ninth grade, more tumors; this time Jetton received chemotherapy and a bone marrow transplant, and the disease went into remission. In 11th grade, the cancer reappeared, as a small tumor on her right lung, and was removed. Finally, last November, in her senior year at a Northridge high school, she found tumors on her thigh, her rib cage and the right side of her skull. Under chemotherapy, all the tumors have disappeared.
But Jetton was back at Childrens Hospital in Los Angeles last month for a five-day stint. Her most recent chemotherapy treatment, administered the week before, had reduced her resistance to infection, and a cold and fever had set in.
“Your whole life is altered,” says Jetton, wearing a Hard Rock Cafe T-shirt and a navy-blue cap and sipping a soft drink, of her years in and out of hospitals and the repeated interruptions in school attendance. “The way you live is different from (that of) most kids your age.”
For people of any age, cancer is considered by the medical community to be a psychologically devastating disease. Morton Bard, professor emeritus of psychology at City University of New York and vice president of service and rehabilitation for the American Cancer Society, has compared the fear it conjures to that created by violent crime. (He does so in his work, “The Crime Victim’s Book,” co-written with Dawn Sangrey.)
“It creates a special psychological circumstance,” Bard says. “It is of unknown origin, it’s a mystery, it gives rise to all kinds of attributions. People can blame themselves or someone else. They try to look for a cause because the cause is unknown. There are very few diseases like that.”
Often viewed as death-dealing and mysterious by adults, cancer is particularly difficult to accept in adolescence, psychologists and oncologists affirm. “The major job of adolescence is to establish one’s self-identity, self-esteem and independence,” says Dr. Stuart Siegel, head of the hemotology/oncology department at Childrens Hospital. “Here you have someone trying to do that, and at the same time they’re hit with this devastating, life-threatening disease.”
To help youths with cancer through their developing years, the hospital has established Teenline, a program that combines educational meetings and social activities to provide participants with a congenial, supportive environment.
The hospital also operates a program that eases the social reintegration of young children into school and a Careline program that pairs the parents of new patients with experienced couples. Other services provide toys to children after painful procedures and medical literature to their families. These programs are partly funded by the Los Angeles Ronald McDonald House, one of 110 residences near hospitals worldwide where parents of cancer patients can stay for $5 a night.
The Childrens Hospital package is considered one of the most comprehensive, as well as one of the most innovative, in the country. “It’s a state-of-the-art program,” says William Redd, pediatric psychologist at Memorial Sloan-Kettering Cancer Center in New York, pointing to the hospital’s early work in addressing the psychological difficulties of cancer patients.
The hospital’s decision to explore the needs of young cancer patients followed studies that showed a steadily increasing survival rate for children. While only 28% of patients under age 15 survived between 1960 and 1963, the percentage of survivors was up to 67% between 1981-86.
“The majority of children are going to survive their disease,” says Ernest Katz, who pioneered the Childrens Hospital psychosocial programs in 1976 and now serves as director of psychosocial and behavioral sciences at Jonathon Jacques Children’s Cancer Center at Long Beach Memorial Medical Center.
“That has radically shifted our thinking from helping children deal with dying to helping children live,” Katz says.
“The goal of cancer treatment today is not only to wipe out the cancer at all costs, it really is to maximize the child’s quality of life.”
For a teen-ager, the quality of life depends largely on being part of the crowd. “No kid wants to be different and cancer makes you different in a big way,” says Katz.
Cancer patients often suffer baldness, weight gain or loss, and amputation of limbs. They must give up sports, may lose some of their friends, and must learn to live with the uncertainty of their existence and the stigma of their disease.
With no peer support, says Myra Saltoun-Moran, co-director of Teenline, adolescents tend to withdraw, sometimes pulling their curtains and remaining in darkened bedrooms.
Although no clinical studies prove that psychological well-being has a beneficial effect on the disease, Saltoun-Moran and other experts believe outlook makes a significant difference. Says Siegel: “There’s no one who can help a child or a family with cancer better than someone who’s been through it themselves.”
Jetton puts her experience in Teenline in more immediate terms. “It’s a good way to cope, because most of your other friends can’t relate to any of the problems you have.
“My supposed best friend hasn’t called me since I was diagnosed this last time. It’s always me who’s doing the calling, and every time I call her, I feel like I’m taking too much of her time.”
Cancer is usually not the topic of choice among Jetton’s friends at Teenline. “You can leave your cancer at home,” she says. Instead there are movie dates, swim parties and retreats. More important, there is a shared understanding of the disease.
“If you’re not feeling well, cancer patients deal with that easily,” Jetton says. “They know the right things to say and do. They can tell when you kinda need to talk about something. They can laugh at some of the gross things that go on.
“With a lot of your friends, the minute you start talking about your illness, whether it’s something humorous, or even if you mention nurse , they clam right up. They don’t want to talk about it, period.”
Missing school for extended periods makes adjustment to daily social vicissitudes difficult. “There are always the little cliques that hang around together,” says Jetton. “If you get out of that, they sort of forget about you. When you come back to school, there’s not much to talk about.
“A lot of time when you come back they really pour on the pity, like ‘How are you, I haven’t seen you in so long,’ ” she adds. “You get sick of that. Like, I’m OK now, I’m healthy. I want to come back and do whatever, the normal things--do my work, go to lunch.”
Like other cancer patients, Jetton has seen the myth of cancer evolve from the irrational fear of childhood acquaintances that it was contagious, like a cold, to the common adult assumption that it means death.
“The first thing people ask you is, ‘Are you going to die?’ ” she says. “Basically, you could say the same thing to them. We all are going to die some day, right?
“The people who are surviving are really fighters,” Jetton points out. “They keep a very positive attitude. That’s why they get through it.”
For Tavo Zavalo, 17, uncertainty about the future is ever-present, but it is coupled with a fierce desire to make up for lost years of living. Found in 1984 to have acute lymphocytic leukemia, the most common and curable form of childhood cancer, Zavalo, who lives with his family in Hacienda Heights, missed much of his early years in high school.
His cancer is gone now, but when he goes for quarterly checkups, he says, “The entire week before I have to go see (the doctor), there’s always that fear that I may relapse. You can relapse and not necessarily feel it,” he says.
For three years and four months, Zavalo underwent chemotherapy. “I had to rearrange my entire life around the hospital,” he recalls.
“The first four months is the heavy stuff. You get the large doses of chemo and radiation,” he explains. “I had to stay in bed. I was feeling sick most of the time. I didn’t have any hair or anything. I didn’t do the normal things, like going to dances or going out on Friday nights.”
Zavalo became dependent on his mother and grandmother for care and watched in frustration as his cousins played soccer and basketball. “That would be very frustrating,” he recalls. “I’d say, ‘Don’t treat me like this, I’m not a little kid.’ ”
Now, Zavalo says, “I have to hurry up and fill in the gaps.
“I try to enjoy life more. It seems more important to me. I try to be open and reach out to people more than I used to.”
Since his illness, Zavalo’s mother, Eugenia Furkawa, has helped Teenline’s Saltoun-Moran organize a support group for Spanish-speaking parents of children with cancer, while her son has become a Teenline peer counselor.
Under the system, counselors trained by program directors talk to new patients for a month or so, hoping to drawing them into Teenline’s twice-monthly get-togethers.
“We just listen,” Zavalo says. “We’re like a person they can release all their feelings to. A lot of times their problems are solved by releasing their emotions. They’re just stressed out and they need somebody to talk to.”
Zavalo knows the worst that can happen. He has seen a number of friends die, and says: “You start thinking, well, what if I’m next?
“Any little illness that we get, we right away assume it’s a relapse when it could be just a common cold. We’re just nervous about what we’re going through.”
However, Zavalo says he remains determinedly positive about his future. He is a freshman at Rio Hondo College in Whittier, where he is making new friends, and plans to transfer to UCLA next year. He is considering a major in computer science or communications, he says, adding: “I am shopping around for a girlfriend.”
Like Zavalo, Susana Acosta, 17, of South-Central Los Angeles, counsels teen cancer patients. A 12th-grader whose cancer was diagnosed when she was 4, Acosta considers the disease “all gone.”
But she cannot forget the memories, which come in “flashbacks,” she says. Sometimes she pulls out the old photographs of herself when she was ill, such as the picture taken at her fifth birthday party. “I was bald with the cake in front of me,” she says.
Acosta got through her hardships with humor, joking about not having to use shampoo, and with a collection of knit caps.
“People used to stare” in malls when she didn’t wear a cap, she says. Her older sister would defend her, she says.
Now she tries to give strength to other cancer patients. “I tell them what I went through. I tell them to take it day by day.”
The psychological impact of having had cancer, and the uncertainty it induces, may follow former patients through adult life, says Katz, who is studying the long-term impact of childhood cancer.
